Nao Haba, Philip Kreniske, Holly A Isenberg, Fred Nalugoda, Mary Ott, Tom Lutalo, Neema Nakyanjo, William Ddaaki, Dauda Isabirye, Rosette Nakubulwa, Robert Ssekubugu, Esther Spindler, Bai Xi Jasmine Chan, Kirsty Sievwright, Godfrey Kigozi, David Serwadda, Nelson Kaulukusi Sewankambo, Susie Hoffman, John S Santelli
{"title":"\"Everyone is Responsible for Their Own Life\": Views on Research Participation Decision-Making Among Adolescents and Guardians Within Uganda's Rakai Community Cohort Study.","authors":"Nao Haba, Philip Kreniske, Holly A Isenberg, Fred Nalugoda, Mary Ott, Tom Lutalo, Neema Nakyanjo, William Ddaaki, Dauda Isabirye, Rosette Nakubulwa, Robert Ssekubugu, Esther Spindler, Bai Xi Jasmine Chan, Kirsty Sievwright, Godfrey Kigozi, David Serwadda, Nelson Kaulukusi Sewankambo, Susie Hoffman, John S Santelli","doi":"10.1080/23294515.2026.2741044","DOIUrl":"https://doi.org/10.1080/23294515.2026.2741044","url":null,"abstract":"<p><strong>Background: </strong>Ensuring the ethical inclusion of adolescents in biomedical trials is crucial to advancing critical health efforts, such as HIV prevention. One key consideration is who makes the decision for adolescent participants to participate. Yet, little is known about what adolescents, and their guardians believe about who should decide if an adolescent participates in health research.</p><p><strong>Methods: </strong>Adolescents and their guardians were recruited from the Rakai Community Cohort Study in rural Uganda between 2020-2021. We conducted and analyzed in-depth interviews with 24 adolescent-guardian dyads about who they believed should make decisions for adolescents to participate in research. In addition, we examined responses from adolescents (<i>N</i> = 80) to a single question from the MacArthur Competence Assessment Tool for Clinical Research. Transcripts were analyzed to understand the range of perspectives on research participation decision-making among adolescents of different ages and between adolescent-guardian dyads.</p><p><strong>Results: </strong>Adolescents and guardians evidenced diverse perspectives on who should decide about research participation. Just over half of adolescents reported they should be the primary decision-maker. As a 16-year-old girl explained, \"this is about someone's life, everyone is responsible for their own life.\" Others identified their guardian as the primary decision-maker, because, as one 14-year-old girl noted, guardians \"have nurtured them up to where they are, and paid school fees.\" Many adolescents across all age groups also endorsed joint decision-making. A late-adolescent girl reported, \"Parents can help [children] and decide for them. In this case, they discuss about it and mutually agree on their decision.\" Guardians' perspectives varied; some believed adolescents should decide, given their involvement with sex and other proscribed behaviors. Many guardians endorsed adolescent autonomy and joint decision-making. Parents and adolescents often agreed and disagreed about consent processes.</p><p><strong>Conclusion: </strong>Consent policies for research should balance respect for adolescent autonomy with the often-diverse perspectives of adolescents and parents on decision-making.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-15"},"PeriodicalIF":0.0,"publicationDate":"2026-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149239904","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"What Does It Mean to Be Cured?: Perspectives from Individuals Living with Sickle Cell Disease.","authors":"Marilyn S Baffoe-Bonnie","doi":"10.1080/23294515.2026.2741040","DOIUrl":"https://doi.org/10.1080/23294515.2026.2741040","url":null,"abstract":"<p><strong>Background: </strong>Hematopoietic stem cell transplantation (HSCT) and gene therapies for sickle cell disease (SCD) are frequently described as cures in scientific literature, clinical spaces, and media reports. Yet, little empirical research has examined how individuals living with SCD perceive the meaning of \"cure\".</p><p><strong>Methods: </strong>Over a 24-month period, ethnographic observations were conducted at a single large clinical research site alongside semi-structured interviews with 25 participants (23 individuals living with SCD and 2 caregivers of children with SCD). Participants represented diverse treatment trajectories, including those who did and did not undergo HSCT or gene therapy. Adult participants ranged in age from 18 to 41, and the children of the caregiver participants were under 12 years of age. Interviews were analyzed using reflexive and abductive thematic and narrative analytic approaches.</p><p><strong>Results: </strong>Four themes characterized participants' perceptions of cure: (1) cure as symptom management and eradication; (2) cure as freedom from social and structural burdens; (3) cure as identity disruption and continuity; and (4) cure as tradeoff. These themes were further organized by three cross-cutting analytic dimensions - temporality, contestation, and embodiment - that shaped how participants articulated cure across clinical and social contexts.</p><p><strong>Conclusion: </strong>These findings reveal a critical divergence between biomedical framings and patient perceptions of cure. As cell and gene therapies expand into clinical practice and public discourse, aligning technological descriptions with lived experience will be essential to prevent misplaced expectations, strengthen trust, and support more socially integrated approaches to clinical translation.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-12"},"PeriodicalIF":0.0,"publicationDate":"2026-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149184909","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Eric G Campbell, Hannah Scotch, Christine M Baugh, Matthew DeCamp, Lauren A Taylor, Lindsey E Fish, Matthew K Wynia
{"title":"Clinician Mistrust in Patients: A Survey of Primary and Urgent Care Clinicians in Colorado.","authors":"Eric G Campbell, Hannah Scotch, Christine M Baugh, Matthew DeCamp, Lauren A Taylor, Lindsey E Fish, Matthew K Wynia","doi":"10.1080/23294515.2026.2741045","DOIUrl":"https://doi.org/10.1080/23294515.2026.2741045","url":null,"abstract":"<p><strong>Background: </strong>Few studies have examined clinicians' mistrust in their patients. We explored this concept in greater detail.</p><p><strong>Methods: </strong>We performed a survey (62.8% RR) of clinicians in primary and urgent care clinics at a university health system and a safety net health system in Denver, Colorado. The survey measured the frequency of clinician mistrust in patients, attitudes about mistrusting patients, perceived benefits and harms of mistrusting patients, and factors associated with mistrusting patients.</p><p><strong>Results: </strong>On the survey virtually all clinicians (99.5%) indicated they mistrusted some patients, though the vast majority did so \"Rarely\" (70%) or \"Sometimes\" (28.6%). Most (57.5%) said it is sometimes ethical to mistrust patients, but 91.3% said mistrusting patients increases the risk of patients mistrusting them, 89% said it increases the risk of a negative patient review, and 68.2% said it might reduce the patient's future access to care. Clinicians attributed mistrust to patient-level behaviors and to institutional and societal factors. In a multivariable model, practicing in a safety net setting (OR 2.07, 95 CI 1.03-4.25) and feeling burned out (OR 2.51, 95 CI 1.02-6.48) were associated with higher odds of mistrusting patients, while spending less than 50% of professional time in clinical care was associated with lower odds (OR 0.20, 95 CI 0.05-0.62).</p><p><strong>Conclusions: </strong>Most clinicians mistrust patients rarely or sometimes, and several institutional and societal factors contribute to this mistrust. Interventions to measure and improve trust in patient-clinician relationships should consider its bidirectional nature and how institutional and societal policy decisions can affect mistrust.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-8"},"PeriodicalIF":0.0,"publicationDate":"2026-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149116089","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Does the Law Reflect Patient Preferences? Discordance Between Legal Surrogate Hierarchy and Chosen Surrogate Decision-Makers in Preoperative Patients.","authors":"Riya Kumar, Andrew Childress, Claire Hoppenot","doi":"10.1080/23294515.2026.2718064","DOIUrl":"https://doi.org/10.1080/23294515.2026.2718064","url":null,"abstract":"<p><strong>Background: </strong>All surgeries requiring general anesthesia carry the risk that a patient will be unable to make medical decisions during the procedure. However, only a small proportion of patients who are not critically or terminally ill complete medical power of attorney (MPOA) documentation, with lower rates among underserved populations. If an unexpected value-dependent decision needs to be made during a surgery (e.g., removal of an organ linked to patient fertility that may affect cancer-related outcomes), the medical team must consult a surrogate decision-maker (SDM) assigned per state law. In this study, we seek to understand what preoperative patients in Texas know about SDM laws and how well these laws align with patients' preferences.</p><p><strong>Methods: </strong>Two investigators approached patients in the preoperative area at a private hospital (PV) and safety-net hospital (SN) and provided a standardized verbal survey examining patient knowledge of SDM laws in Texas and who they expected to make decisions for them, as well as patient demographics.</p><p><strong>Results: </strong>Of the 101 patients surveyed, nearly 30% designated a preferred SDM that differed from the one assigned by the Texas law. There was no significant difference in rates of discordance between patients by location, language, race, or ethnicity. Only marital status was shown to have significant effect on concordance (<i>p</i><.001). Patients at PV were significantly more likely to have MPOA documentation (<i>p</i> < 0.05).</p><p><strong>Conclusions: </strong>Our study reveals a significant gap in patients' understanding of local SDM laws. There is likely similarly low understanding of local laws throughout the country. This misunderstanding may miss opportunities for patients to have their preferred decision-maker participate in their care and place physicians at odds with the law when attempting to follow patient preferences divergent from the SDM hierarchy. To best honor patient preferences, surgeons should have early conversations with all preoperative patients about SDM.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-8"},"PeriodicalIF":0.0,"publicationDate":"2026-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148798995","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AJOB Empirical BioethicsPub Date : 2026-07-01Epub Date: 2026-07-06DOI: 10.1080/23294515.2026.2691713
Vivian Kim, Adira Hulkower, Elizabeth Chuang
{"title":"Who Receives Ethics Consultations? An Analysis of Racial and Ethnic Characteristics of an Ethics Consult Service in an Urban Academic Medical Center.","authors":"Vivian Kim, Adira Hulkower, Elizabeth Chuang","doi":"10.1080/23294515.2026.2691713","DOIUrl":"10.1080/23294515.2026.2691713","url":null,"abstract":"<p><strong>Background: </strong>In healthcare settings, it is crucial to understand the identities of patients receiving services, both for cultural considerations and to identify and prevent disparities in care.</p><p><strong>Methods: </strong>Our retrospective observational study analyzed 763 adult bioethics consultations from 2016-2024 at a large urban academic health system and compared the demographics of patients receiving bioethics consultation to the general patient population. We also evaluated demographic differences between patients receiving consults for different categories of ethics issues.</p><p><strong>Results: </strong>We found that Hispanic and Asian patients were underrepresented among those receiving ethics consults, while Black and White patients were overrepresented. Additionally, patients receiving consults were more likely to be male and older. Consults for refusal of medically indicated care were significantly associated with younger age, HIV/AIDS diagnosis, and having diabetes with complications. Initial bivariable associations of consults for refusal of medically indicated care with race and language did not remain significant after adjustment for confounders.</p><p><strong>Conclusions: </strong>The finding that Hispanic and Asian patients were less likely to receive ethics consults may reflect language-related communication barriers or underrecognition of ethics-related concerns. Findings highlight racial and linguistic disparities in ethics service utilization, which may mirror broader structural inequities in care delivery and provider communication. Addressing these gaps is essential for advancing ethical, culturally responsive care. Future efforts should focus on improving access to ethics resources for marginalized groups and investigating how structural racism and communication dynamics influence ethics consult initiation.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"151-159"},"PeriodicalIF":0.0,"publicationDate":"2026-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148391969","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AJOB Empirical BioethicsPub Date : 2026-07-01Epub Date: 2026-08-18DOI: 10.1080/23294515.2026.2718057
Joelle Robertson-Preidler, Mikaela Kim, Sophia Fantus, Janet Malek
{"title":"Facilitating Decision Making at End of Life: How Physicians' Experiences Can Inform the Work of Clinical Ethicists.","authors":"Joelle Robertson-Preidler, Mikaela Kim, Sophia Fantus, Janet Malek","doi":"10.1080/23294515.2026.2718057","DOIUrl":"10.1080/23294515.2026.2718057","url":null,"abstract":"<p><strong>Background: </strong>End-of-life treatment decisions can be morally complex and may lead to contention. Clinical ethicists are often consulted to address uncertainty or conflict during end-of-life decision-making. This study explores physicians' perceptions of challenges to end-of-life decision-making to help inform clinical ethics practice.</p><p><strong>Methods: </strong>Semi-structured interviews were conducted with surgeons, nephrologists, intensivists, emergency physicians, and oncologists regarding challenges and barriers to effective end-of-life decision-making. Interview transcripts were thematically analyzed.</p><p><strong>Results: </strong>We identified seven themes regarding barriers and challenges to end-of-life decision-making, including 1) physicians' emotional discomfort, 2) organizational barriers, 3) differing perceptions of goals and expectations, 4) appeals to hope and miracles, 5) patient and family mistrust, 6) interfamily dynamics, and 7) patient and family psychological factors.</p><p><strong>Conclusions: </strong>Physician, organizational, patient, and family factors can interact to cause misunderstandings, distress, and mistrust that can delay or stymie communication and decision-making. Clinical ethicists can help physicians identify, acknowledge, and address important but often overlooked factors such as emotional burdens, psychosocial context, and the importance of building trusting relationships.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"174-181"},"PeriodicalIF":0.0,"publicationDate":"2026-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148799025","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AJOB Empirical BioethicsPub Date : 2026-07-01Epub Date: 2026-08-19DOI: 10.1080/23294515.2026.2718059
Katya Kaplow, Amanda Buster, Elisa J Gordon, Anji E Wall, Tessa Flower, Carolyn N Sidoti, Macey L Levan, Brendan Parent
{"title":"Organ Procurement Organization Perspectives on Normothermic Regional Perfusion Practices: A Qualitative Interview Study.","authors":"Katya Kaplow, Amanda Buster, Elisa J Gordon, Anji E Wall, Tessa Flower, Carolyn N Sidoti, Macey L Levan, Brendan Parent","doi":"10.1080/23294515.2026.2718059","DOIUrl":"10.1080/23294515.2026.2718059","url":null,"abstract":"<p><strong>Background: </strong>Normothermic regional perfusion (NRP) increases the availability of quality transplantable organs. However, there are unresolved ethical challenges and variability in approaches to NRP facilitation across U.S. organ procurement organizations (OPOs). We sought to assess the landscape of OPO member perceptions on facilitating NRP.</p><p><strong>Methods: </strong>Semi-structured interviews with OPO executives assessed their experiences collaborating with hospital partners, communicating with donor families, and training hospital personnel to implement NRP. Qualitative themes were elicited through deductive and inductive thematic content analysis.</p><p><strong>Results: </strong>Twenty executives participated (53% participation rate). Five themes emerged: 1) comfort with allowing NRP procedures varied across and within donor hospitals and recipient transplant centers; 2) most participating OPOs lacked standardized operating procedures regarding case protocols and data collection protocols for NRP cases; 3) OPOs disclosed varied information about NRP during authorization conversations with donor families; 4) OPOs collaborated with donor hospitals and recipient transplant centers before, during, and after NRP cases; and 5) OPOs engaged in proactive educational efforts about NRP with partner hospitals before NRP cases are presented.</p><p><strong>Conclusions: </strong>Our findings suggest that proactive, consistent, and cross-organization collaboration may help hospitals decide whether and how to adopt NRP and may help OPOs more effectively address challenges regarding the implementation of NRP. Future research should empirically assess NRP-related OPO practices.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"182-191"},"PeriodicalIF":0.0,"publicationDate":"2026-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13502116/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148799119","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AJOB Empirical BioethicsPub Date : 2026-07-01Epub Date: 2026-07-22DOI: 10.1080/23294515.2026.2691711
Betty Cohn, Tesla Theoryn, Olivia Sommerland, Priyanka Murali, Joon-Ho Yu, Kailyn Anderson, Kirsty McWalter, Britt Johnson, Dan Doherty, Michael J Bamshad, Katherine E MacDuffie
{"title":"Capturing Perceived Utility from Qualitative Studies of Genomic Sequencing: Translating a Conceptual Model into a Working Codebook.","authors":"Betty Cohn, Tesla Theoryn, Olivia Sommerland, Priyanka Murali, Joon-Ho Yu, Kailyn Anderson, Kirsty McWalter, Britt Johnson, Dan Doherty, Michael J Bamshad, Katherine E MacDuffie","doi":"10.1080/23294515.2026.2691711","DOIUrl":"10.1080/23294515.2026.2691711","url":null,"abstract":"<p><strong>Introduction: </strong>As genomic sequencing (GS) is integrated into clinical medicine, understanding how patients and families perceive its utility is critical. Conceptual models for perceived utility have been developed, however, direct application of such models to independently-collected qualitative data remains rare. To fill this gap, we translated a comprehensive model of perceived utility (Smith et al. 2022) into a codebook and revised it <i>via</i> application to a qualitative dataset capturing parent-reported utility of GS.</p><p><strong>Methods: </strong>Using the domains and subdomains from Smith et al.'s conceptual model, we developed an initial codebook. We tested the derived codebook on data from 40 interviews with parents of children enrolled in SeqFirst, a research study offering GS for critically ill newborns in the neonatal intensive care unit and young children (<3 years) with unexplained developmental differences. Four coders independently applied the codebook. We addressed ambiguities through memoing and refined definitions <i>via</i> study team consensus.</p><p><strong>Results: </strong>The resulting codebook includes all five of Smith et al.'s (2022) domains: clinical, emotional, behavioral, cognitive, and social utility. We renamed and relocated several subdomains to add additional clarity in coding decisions, and developed definitions for all subdomain codes. The final codebook is included as a resource for future research.</p><p><strong>Conclusions: </strong>This study translates a conceptual framework of perceived utility of GS into a practical codebook for qualitative research. Our intent is to facilitate conceptually-grounded, replicable coding across studies and settings, supporting both inductive and deductive analyses. Applying this codebook can enhance comparability of qualitative findings, inform refinement of conceptual models, and guide the further development of patient-centered measures of GS utility.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"129-140"},"PeriodicalIF":0.0,"publicationDate":"2026-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148563157","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AJOB Empirical BioethicsPub Date : 2026-07-01Epub Date: 2026-06-29DOI: 10.1080/23294515.2026.2691712
Clare Whitney, Jane Evered, Fiona Larsson, Irene Pyo, Ga Lee
{"title":"\"I Have Someone's Life in my Hands\": How Cancer Care Partners Experience and Navigate Moral Challenges.","authors":"Clare Whitney, Jane Evered, Fiona Larsson, Irene Pyo, Ga Lee","doi":"10.1080/23294515.2026.2691712","DOIUrl":"10.1080/23294515.2026.2691712","url":null,"abstract":"<p><strong>Background: </strong>Cancer care partners (also known as caregivers or caretakers) are individuals without formal training or experience in cancer care who provide health or social support to others with cancer. Care partners are oftentimes family or friends of people with cancer. While the experiences of cancer care partners are well documented, little is known about the moral challenges they face. The purpose of this analysis was to explore the moral landscape of cancer care partners' experiences across disease and treatment trajectories.</p><p><strong>Methods: </strong>We used the HEXI methodology and dimensional analysis to conduct an analysis of qualitative data from individual interviews with 22 cancer care partners. Interviews were audio-recorded, transcribed verbatim, and aligned before being analyzed for the purpose of this analysis.</p><p><strong>Results: </strong>Our analysis resulted in a situation specific theory of how cancer care partners navigate the range of moral challenges they experience. Through the conceptual perspective of The Role, cancer care partners navigate moral challenges through collaborating in care with healthcare teams, other care partners, other support persons, or the people they are caring for. Prior to seeking collaborative care in these ways, a cancer care partner must have a sense of perceived collaboration efficacy. If collaborating in care is successful, cancer care partners can achieve moral resolution regarding the moral challenges initially faced. However, if collaborating in care is unsuccessful, the cancer care partner remains stuck in a morally challenging situation.</p><p><strong>Conclusions: </strong>Future inquiry should empirically extend and refine this situation specific theory in heterogeneous populations. Practice and policy efforts can help improve care for cancer care partners, including direct communication and moral care partner-inclusive supportive care.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"141-150"},"PeriodicalIF":0.0,"publicationDate":"2026-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148353917","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AJOB Empirical BioethicsPub Date : 2026-07-01Epub Date: 2026-08-20DOI: 10.1080/23294515.2026.2718056
Meghan E Hurley, Kristin Kostick-Quenet, Jared N Smith, Joanna Smolenski, Rita Dexter, Jennifer Blumenthal-Barby
{"title":"In Algorithms We Trust? Stakeholder Perspectives on Algorithmic and AI-Based Survival Calculators.","authors":"Meghan E Hurley, Kristin Kostick-Quenet, Jared N Smith, Joanna Smolenski, Rita Dexter, Jennifer Blumenthal-Barby","doi":"10.1080/23294515.2026.2718056","DOIUrl":"10.1080/23294515.2026.2718056","url":null,"abstract":"<p><strong>Background: </strong>The integration of digital algorithms and artificial intelligence (AI) into healthcare has enabled personalized medicine, e.g., prognostic calculators that predict survival/mortality estimates and patient risk stratification. Alongside these advancements, understanding patients' trust in and perspectives on the use of these tools in their healthcare is essential.</p><p><strong>Methods: </strong>Interviews were conducted with advanced heart failure patients (and caregivers) who received algorithmic personalized survival estimates (PSEs) in the context of education and decision making about left-ventricular assist device (LVAD) therapy as part of their clinical care. We examine stakeholder trust considerations for their algorithmic-based PSEs received during LVAD education and the potential impact of AI-generated PSEs on trust in PSEs.</p><p><strong>Results: </strong>Rationales for patient trust in their received, algorithmic PSEs fell into three categories - relational (e.g., physician trusts algorithm's output so patient does), epistemic (e.g., algorithm accuracy and performance), and personal belief-based (e.g., religious beliefs about algorithmic vs. God's predictive power). Relational trust considerations were mostly absent from trust considerations for hypothetical AI-generated PSEs, and despite acknowledgement of potential performance benefits (greater predictive power) of AI-based tools, responses were dominated by personal belief-based trust considerations rooted in inaccurate understandings of the application of AI in the healthcare context (e.g., AI as \"the Terminator\").</p><p><strong>Conclusions: </strong>While algorithmic PSEs benefit from epistemic and relational trust considerations, AI-based PSEs may face distinct barriers rooted in misconceptions about AI's capabilities or application. Combating such misconceptions about AI may require a combination of approaches, like furthering AI education, physician oversight for AI systems utilized in their patients' care, and more conscientious framing and language regarding what AI is and can do. As AI continues to integrate into medical care and decision-making, these findings underscore the importance of acknowledging and addressing personal and relational dimensions of patient trust in AI systems in addition to epistemic or performance aspects.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"160-173"},"PeriodicalIF":0.0,"publicationDate":"2026-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148798955","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}